WWhen she was pregnant with her second child, Busisiwe Beko was living with HIV, but that didn’t worry her. She had been taking antiretrovirals for years, and as a seasoned AIDS activist in South Africa, she knew that as long as she kept taking her pills every day, her second baby would be born. would be born free from infectionjust like her first.
But there was another disease lurking in Beko’s lungs: tuberculosis (TB). hiding behind the common signs of pregnancyThe disease turned her pregnancy into a nightmare.
At the clinic she attended in the Western Cape township of Khayelitsha, she was given medication when nurses realised she had TB, but it didn’t work. At five months pregnant, she was diagnosed with drug-resistant TB (DR-TB).
Beko became increasingly ill. “I wasn’t sure if I would make it,” she says.
She was finally admitted to hospital at seven months into her pregnancy, but because few treatments are known to be safe for pregnant women, she didn’t begin taking medication—a brutal 24-month drug regimen—until after she gave birth. Her son was born with DR-TB.
Worldwide approximately Every year 500,000 people are diagnosed with DR-TBwhich is already difficult to treat without the added complication of pregnancy. In fact, there is still no recommended treatment regimen for DR-TB in pregnant women.
Pregnant women are excluded from drug trials, meaning doctors don’t have high-quality clinical trial data to work with. Instead, they have to rely on shakier forms of evidence, such as individual case reports, analyses by patient records and data from animal studies or trials in which people were allowed to continue to participate after an unexpected pregnancy.
As a result, pregnant women do not benefit from the shorter, softer and more effective Treatments for TB that have been developed over the years.
Women in some countries also face discrimination and substandard care from cautious health workers. Some have been called “stupid” for getting pregnant or even forced to have abortions because “we don’t know what you’re going to give birth to,” according to one 2019 study in South Africa’s KwaZulu-Natal province.
This does not only apply to tuberculosis drugs. Less than 1.5% of drug studies performed between 1960 and 2013 include pregnant women. A major reason is fear of possible risks to the fetus. The 1960s thalidomide scandal – in which a drug intended to treat morning sickness resulted in more than 10,000 children being born with serious birth defects – has contributed to researchers’ hesitation.
Since her experience, 49-year-old Beko has been fighting for change and there are signs that it is working.
In May, the World Health Organization’s first working group on TB in pregnancy held its inaugural meeting. The group is made up of scientists, researchers and activists, including Beko – whose son, Othandwayo, is now a healthy 18-year-old.
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“Being pregnant doesn’t mean people can’t make good decisions for themselves,” says Beko, who works for the South African organization TB certificate. “Pregnant and lactating women deserve good health care just like everyone else.”
Meanwhile, the results of the first TB trials, which included pregnant women from the start, have become known – the Defeat-TB trial conducted in South Africa, where the WHO lists are rated as one of the 30 countries with the highest burden of the disease.
Pregnant women will also participate in two studies conducted by the Smart4TB consortiumthat will determine the effectiveness of shorter treatment regimens. Smart4TB is a USAid-funded project led by the Johns Hopkins University TB Research Center with groups including the Elizabeth Glaser Pediatric AIDS Foundation and Treatment Action Group.
The Prism-TB the process will start in December or January, and the Infringement TB Trials will begin later in 2025.
“It’s time for researchers to stop saying, ‘We don’t have data.’ The data is there in the communities, they need to start collecting it,” Beko says.
“Pregnant and lactating women have clear options for HIV, a disease that only emerged in the 1980s,” she says. “Why isn’t that the case for TB, which has been around much longer?”
Nicole Salazar-Austin, an assistant professor of pediatrics at Johns Hopkins University, says the TB world has not yet caught up with the progress made in HIV. Earlier in the HIV epidemic, it was clear that doctors would have to start giving pregnant women drugs, because more than half of the babies born with the virus would die before they were two.
“Babies are affected by TB, but they are not always infected“, she says. “The outcomes are not great; they can be born prematurely, or small, and TB can also increase the risk of miscarriage.”
Including pregnant women in trials requires some adjustments, Salazar-Austin says. They need extra monitoring for any changes in the mother or baby’s health, and dosages need to be carefully determined.
Clinical trials are never completely without danger, but Salazar-Austin believes highly controlled studies are the right place to examine the risks.
“These risks exist regardless. But without proper information, it falls entirely on the shoulders of pregnant women and their doctors.”